Showing posts with label how cancer tries to take it out of you. Show all posts
Showing posts with label how cancer tries to take it out of you. Show all posts

Wednesday, October 8, 2014

Little That is Noble


My mother's biggest fear was going old and senile, of losing her marbles before her body shut down. She would, from time to time, remark that she wished there was a bottle of that "special Tylenol" in the top of the cupboard, referring to the Tylenol cynaide scandal of the early '80s, just in case she started to slide into dementia. Those jokes were kind of half jokes / half wistful thinking living in a state where any sort of assisted suicide would be seen as punishable to the greatest extent of the law.

My mother, brave and strong and tough as nails, weathered some of the greatest heartaches life had to dole out, the final coup being a diagnosis of stage IV lung cancer one week shy of her retirement. She dug in, for us, and tried to stave off the cancer that would inevitably kill her. She tried, beyond probably her own desires, to stick around as long as possible.

And the end was a shitty one. The entire process, honestly, was a shitty one of doctor's appointments and side effects and loss and not knowing, really, when to say "when". She did it for us, true to her form of putting her own desires last, loving the people who needed the comfort of a few more months or days more than her own need for peace.

We talked through the "special Tylenol" options, downloading Final Exit only to discover that the options were to put her physician friends in professional peril or die of suffocation, her worst nightmare. I remember sitting on the ottoman of the big chair where she spent most of her time, walking through the options with my sisters, her shaking her head at each one. That was about the time when we decided hospice was the best option and things went downhill on icy skates.

In my mind, there is little that is noble about the way we treat the dying in this country. There is little noble about asking someone to suffer a horrible end or to be drugged nearly unconscious until her/his body fails. There is always the question of when to say goodbye, because there is always false hope. There is always the question of what to do, how to be, what to say, who to involve. I brought David and Ava in to say goodbye to my mother in the final days of her life. Ava clung to her father's neck crying "That's not my grandma! That's not my grandma!" while David buried his head in my waist. I don't know that I can forgive myself for that failure as a parent, for giving them that fearful last look at someone who loved them so deeply, who was hilarious and full of energy and love all of their lives. Instead, my mother was a shadow of herself, incoherent and frightening. 

What a beautiful thing it would have been to have had her pass on her own terms, our small family with her, her having said her goodbyes in her own way. She could have kissed and hugged all of her grandchildren, she could have had a final drink with her sons in law, she could have given each of us girls a special kiss on the cheek and held our hands as she did in quiet moments. Yes, that night would have been one of the hardest in all of our lives, but she would have gone out strong. She would have been herself. For those of you who knew my mom, you know what I am talking about. On her own terms, just like she lived her life.

I watched this video from this beautiful young woman who is now living in Oregon so she can end her life with dignity, vibrant and true. People faced with a terminal illness want and deserve a choice in the matter of how they live out their final days. I can't say this much better than it's described in the video, but I honor her choice as it may some day be my own. 


Saturday, October 1, 2011

Navigating Who I Am (in this space)

Little hands crept around the door frame. "Mama?" her voice called tentatively. "Can I ask you something?" I was in the shower and panicked for a moment. Ever since my first surgery, we'd made an agreement with the kids that time in the shower and getting dressed time were "personal time". "Dad doesn't watch Grandma Pat get dressed. There is a time when you get old enough that privacy becomes important," was my reasoning to them, but it was 100% that I didn't want the children to see what had become of my scarred and destroyed body. I thought it would scare them. Because, in all honesty, it still scares me.

But here she was, my little girl, needing something.  "Come in, sweet girl," I called. She came in, fully in the middle of her thoughts, and stopped. She looked. She looked puzzled. Then, taking in what she saw in this new landscape of her mother's body, she started in with her question. I smiled, she smiled. It was ok.

Dealing with the reality of what happens to your body during breast cancer treatment is one of the most difficult aspects of living through this journey. You feel sick from the treatments, you fear death, you fear the unknown, you have to work through all sort of emotional issues with friends and loved ones about your illness but one of the hardest things, every day, is to deal with the body that you inhabit. For me, that is feeling stripped down, genderless, alien myself. I remember seeing a picture of Ralph Fiennes as Voldemort in the last few Harry Potter movies and being horrified because I identified so strongly with his bald, pale, almost genderless presence. That's the shit side of what body image in this space does to you. I've mourned that in previous posts, but it's something that is always with me.

Yesterday, a friend sent me an article that spoke so clearly about what its like to feel the tug and pull of these body changes. Even if you are right with it (which, obviously, I am SO not), there are others whose opinion, feelings and thoughts you have to navigate. Children, partners, friends...it's overwhelming. My means of dealing with it have been to turn inward and just try to put my head down and get through it, figuring that at some point the new normal will kick in (post-chemo, new surgeries, weight loss) and I will be able to deal, or at least deal with what is permanent. But its hard and lonely working that way, even though daily I hear from friends that I look beautiful. It's a mind mess I that I am still working to resolve.

So this article and the Scar Project in general has done a lot for me. These are *beautiful* women, lovingly photographed by a fashion photographer. Some look amazingly beautiful, some are just who they are. I remember seeing the photo of the pregnant woman on a poster in Cincinnati and being shocked and horrified before I myself was a double mastectomy survivor.

Now, I want others to see so that we can make this all more normal. It's there and it's the truth. And there is no shame. And there can be beauty. But shit, it's hard.

Article here:  http://www.brainchildmag.com/essays/fall2011_lynch.asp

The Scar Project website here: http://www.thescarproject.org/

Friday, May 27, 2011

Into the Void

The past two days have been rough, really rough. In them I have learned a couple of things, the most important being that perspective is everything. I'd guess that people talk the biggest game about the upcoming bungie jump until they peer over the platform and nearly lose their load. I am here to tell you that a mastectomy covered in bandages is the equivalent of the bravado that happens on the ground. The bandages come off and your guts are in your throat. Facing things head on in this space rocks your world.

So all of these silly things have been floating through my mind for the past couple of days. I know it sounds really bizarre, but I feel like I am saying goodbye to a part of myself that has been incredibly important to me. "What?" people say, "they are only breasts! Who cares as long as your are healthy!" *

I care. Let me make it clear.

I do care. I care that I am healthy, but I also care that I have lost a part of my body that meant a lot to me. At the risk of sounding completely vain, before having children this was one of my, ahem, better attributes. I was known in college as the girl who had the Vogue model breasts. So, pardon me if I seem shallow, but I am bummed that they are gone. I am a woman through and through and I loved that aspect of my femininity. (side note: we all know that this was like 20 years and 100,000 miles ago...yes, the warranty had expired and they needed retreads...but let's not mar the story with the addition of unnecessary facts).

And I am really bummed that I had to explain to my kids that I don't have breasts anymore. That is a fucking hard thing to explain to child. How does a child work that around in his/her brain? And when I give my kids hugs now, their little heads strike hard muscle instead of the softness that they have known since the moment they were brought into this world. I remember snuggling up to my mom as a child, the softness, warmth and her smell enveloping me. I know this is important to my kids too. And I know they will deal, but it sucks for them too. So much suckitude.

And there are countless other things to be mad at. Things I can't begin to consider and things that I hope will normalize. I am trying not to hunch over. I am trying to look at myself in the mirror. I am trying not to feel like a freak. I have met a handful of women who have gone this route and have done it with incredible grace. They have found that middle ground and I am reaching out to them and learning from them. As I sit here one month out from the first surgery, it's like starting all over again but not feeling prepared. I had written off this branch of the decision tree, remember? It's not forever, but it's for 6 months which is a really. long. time.

I'm trying to find the humor. I'm trying to find the thing that sticks for me about this experience and is the gem I take from it. A friend told me that maybe it's my Amazon heritage come to fruition. I kind of like that idea. Or, this is the prism through which to see life for while (I could totally pass as a man...hmmm). Or I just play it off as well as I can with Aunt Pat's advice about always looking fabulous as long as you have red lipstick and a Hermes scarf. If you can't fix it, feature it, as Joanna always says. But push it away with humor or bring it in with anger, it's wounding in a way that I know I will survive, but that I need to honor.

*I also want to say that in the not-so-distant past I was very cavalier with a friend about this very subject. I have a couple of friends who are BRCA positive and have been grappling with whether or not to do elective bilateral mastectomy. In talking to them (before my own BC diagnosis), I think I was really preachy about preserving health, yada yada and all with the "they're just breasts" kind of talk that makes me cringe now. It's a BIG decision. One that I would make again, absolutely, but I wish I had been more sensitive then given what I know now.

Friday, May 6, 2011

Reality post

I need to buck the hell up.

I've been sitting here for the past few days feeling sorry as shit for myself. My body aches, I've reached my 7-day limit on being sick, I've had allergies, I've been depressed as hell. Every morning Ava turns on the song Endless Night from the Lion King and I am awash in tears.

It's a slippery slope, this one. It's easy to creep around and be protective. It's close to the bone and frightening to feel so vulnerable. 

So I have started thinking of things that I can and can't control/do and do not know in order to bring some discipline to my mind.

Here are the things I don't know:
1) If I will ever feel normal in my own body again
2) If cancer will come back and if I will have to deal with this again in another form
3) How things will be days, weeks, months from now

Here are the things that I do know:
1) I have an amazing husband who somehow is powering through this time
2) My kids are the most sensitive, wonderful children I could ever hope for
3) I am lucky to count my sisters as my friends and my friends as life lines that keep me moving and laughing through otherwise deep waters
4) The sun does shine in Michigan

So, that's just today. Tomorrow may be different. Who knows what next week will be, or a month from now, or next year. But it's today. And the sun is shining. And I am going to put on some sunscreen and sit outside.

Note: I was going to go sit outside, until I realized that my over-zealous (although still amazing) gardner-husband has spread some sort of fish blood emulsion all over the front beds. So, instead I am going to read Tina Fey's book and look sit in the sunlight indoors...away from the hell smell.